Now, the Currier family is calling on the Food and Drug Administration to approve a drug that has shown promise in clinical trials.

"Most kids with DMD are in a wheelchair by the time they are 12, and the life span is 19, 20, 21," said Linda Currier, whose son, Lucas, was diagnosed with the disorder. "But, I mean, it's fatal."

DMD strikes one in 3,500 boys. The children are born without a muscle protein that acts like a glue. Without it, their muscles stop working, one by one.

Currier said eteplirsen, a drug that showed great promise in clinical trials, has hit a roadblock. Late last year, as it was poised for approval, the FDA ordered more testing after raising questions about its effectiveness.

"We can't understand why the FDA would stall on something like this when it's a fatal disease," she said. "The leading scientists, the leading researchers in the field, people that have worked on DMD 30 years, 40 years, are saying this medication is safe. It's effective. It works. It is a no-brainer."

Like they are for many other sixth-grade boys, sports are Lucas' passion, whether it's playing hockey with his dad, playing soccer in his wheelchair or being manager for his baseball team.

He said he wants to be able to play sports like other children his age.

"If it can be approved right now, this can be the first generation of kids with DMD that can be saved, which could be incredible," Currier said. "If it doesn't, it's going to be decades. It will be decades before it will be approved."